I need some information on Tegretol. I just came back from another trip to the ER and FINALLY had someone that listened to me. After describing what was going on and going repeating as I had the last few times I went that this was NOT a headache (and seeing one hit me helped as well) this doctor looked at me and said "You are correct. This is not a headache. This is Trigeminal Neuralgia and we we are going to give you some Tegretol along with a few other things tonight and then send you home with a prescription for Tegretol.

So now that I know what the name of this horrible nightmare I have been experiencing is I am coming to all of you for information on this medication. Of course I will be reading up on it but the information I look up is seldom as good as the answers that I get from people that have taken/are taking this medicine.

Does it work well? Any side effects that I should know about or watch for (I know this is also a seizure med. so I am hoping I will get lucky and it will help me with those as well ). Any information I could get would be very appreciated.

Since I have now gone almost 2 hours pain free I am going to get some sleep. My thanks to each and every person on this forum for being so wonderful. I don't know what I would have done without all of you!

rob

12-21-2010, 05:15 AM

As you know, I've been on Tegretol for a few weeks now to treat my TGN. It took around 5 days, I think, to really kick in. So far, I have only had a couple of minor tingling sensations that are my warning that a TGN flare is imminent, but I've not had any full flares for a couple of weeks now. The drug has a laundry list of possible side effects, but as of yet, I have experienced no side effects at all. Honestly, I would not care if I did experience some side effects. ANYTHING that takes away the living hell known as Trigeminal Neuralgia is worth it regardless of side effects. Tegretol is the last pharmaceutical option for me in treating the TGN. My only other options beyond it are targeted radiation therapy (Gamma Knife), and after that, actual neurosurgery. So far I am 100% happy with the drug's effectiveness.

I hope it works for you too. Sorry to hear you most likely have TGN, but you might as well know about it sooner than later, so you can treat it. You know, I have broken bones, sustained concussions, had major skin lacerations from a car wreck, all sorts really painful injuries in my life, but the pain from all those things combined is not as bad as the pain from TGN. It was pretty disheartening to be diagnosed with TGN, and when I discovered the condition's other title-"The Suicide Disease", I was asking WTF did I ever do to deserve all this.

I hope your pain from TGN is finally gone for good,

Rob

tgal

12-21-2010, 05:30 AM

I can understand the "suicide disease" thing. I was telling my friend on the way to the hospital after one hit that made me scream that I wasn't sure what was worse, the pain or the fear of the pain. I don't know if that makes any sense but I began to understand how lab rats feel when they are using them for testing. Maybe putting them in a special cage and shocking them out of no where to see how they react. Then all the smart people write papers about how the rats became scared of everything and almost stopped moving because they didn't know what would set them off. Maybe that only makes sense to me but for me it is exactly what I feel like.

As for gone for good, no. I understand that tingling sensation and it is one of the reasons I am awake still at 6:30 in the morning. I began to feel that about an hour ago which let me know that the meds from the hospital are wearing off. I plan to be at the pharmacy when they open to get the prescriptions filled. I don't know if the dosage will be right but I finally have a bit of hope that I am on the right path and maybe there is an end in sight. For now I will just sit and type until I can go to the pharmacy and get the meds. I will also cross every finger and toe that the hospital meds hold me until then.

As a side note... I like you a lot Rob and there are many things I admire about you but I wouldn't have minded not having this in common with you. Although you had my sympathy before you most definitely have it now

rob

12-21-2010, 06:03 AM

I know exactly what you mean about living with the fear of another round of pain just waiting to hit you. I am not one to fear much of anything anymore, I guess I've been through so many things that I'm somewhat de-sensitized to certain types of pain or stressful events, but I find myself living with apprehension, and fear still that this particular form pain will return.

You know that Tegretol is an anti-convulsant. Do you think it could also help you with the convulsions you have been having? A two for one deal would be a good thing I think. Anyway, go get your meds, and try to get some rest.

Rob

mountaindreamer

12-21-2010, 04:24 PM

hi mari,

i hope your meds are working and that you have had a pain-free day. i am glad that you and rob have each other to lean on through this struggle with pain and trying new medications. But, like you, i am so sorry that you have this in common.

Linda From Australia

12-22-2010, 02:50 AM

How are you feeling today tgal? And Rob are you still having some relief from your pain?

tgal

12-22-2010, 07:36 AM

Good Morning,

Thanks for checking Ms Linda! I am better today. I was finally able to get sleep which was the first time in 3 days. That helped a lot! The new medicine is going to work. I know this because the shot at the hospital took it away completely and the pills I have now cuts it down even though it doesn't stop it. I just have to go to the Dr and find the right dose.

After reading up on this I do believe I know why this hit me when it did. I was on a very high dose of ammitriptyline for the fibro and sleep. I had trouble with the tingling thing in my face and slight pain for months but I ignore it because I have weird stuff like that all the time. I had noticed that the face pain was getting worse but I am going through a time where everything is acting up so I didn't think too much about it.About 4 weeks ago I ran out of the ammitrip. and I had no refills. It was not long after that the tingling and slight pain began to ramp up in intensity although I didn't snap it was the same thing until I was reading about medicine options and it said that on occasion ammitripyline is used early on for TN. The document went on to say that it usually does not work for long and stronger meds will be needed but it is an option for people who can't take the main meds. More proof of how our meds can alter bloodwork/symptoms and why the doctors must look at more then just that.

Rob, your comment about the seizures was a good one. That is something that I wondered as well. I am hoping that it works out that way! I would love to find something that controlled the seizures as well as this new companion of mine.